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After Words

S. Lochlann Jain Series/Special. (2013) S. Lochlann Jain discusses her book, 'Malignant How Cancer Becomes Us.' New. (Stereo)

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Us 8, Ivf 5, America 3, Fda 2, Susan Sontag 1, Weir 1, Becker 1, Herriot 1, Nixon 1, Bobby 1, Lance Armstrong 1, Dr. Jain 1, Pennsylvania 1, Virginia 1, United States 1, The Patientspatience 1, Cdc 1, Ahold 1, Amazon Kendall 1, Steve 1,
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  CSPAN    After Words    S. Lochlann Jain  Series/Special.  (2013) S. Lochlann Jain  
   discusses her book, 'Malignant How Cancer Becomes Us.' New....  

    November 2, 2013
    10:00 - 10:56pm EDT  

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country to find a cure. she argues that each cancer patient generates millions of dollar in revenue for the health care industry. and other industries benefit from the high incident of the disease as well. the program is about an hour. .. i wrote about cigarettes in my first book but i never expected
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to write an entire book on cancer until i was diagnosed at a relatively young age, diagnosed at 36 and i was astonished at how the different i thought -- how different it was going through treatment than what i had heard about cancer and what i expected cancer to be. and i sort of expect did -- i expected to join a well oiled machine in which the cure wasn't obviously guaranteed but people knew about my particular cancer and what i found was something really different so i couldn't help starting to write about it. >> host: i love the section where you describe going to the doctor and getting the diagnosis of cancer. there was some awkward moments there. tell me a little bit about that incident. >> guest: there were a few awkward moments about my diagnosis. one was the doctor who diagnosed
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me was actually a medical professor of my mothers and she had been in a medical school class he he had and petitioned against his use of pornographic slides. unfortunately. he was the one who is my surgeon and you know i have done quite a bit of research. i am a researcher so of course when i was diagnosed i did a lot of research on my own disease and came up with a stack of controlled trials and a bunch of questions. i was particularly interested in my prognosis. so i brought in this chart and the chart has you know the tumor size on one side and the number of years you are expected to live on the other side and so i gave him this number and i said what does this mean? he said you know it means exactly what it says. that was a really confusing moment for me because it gave me the number and what i actually
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wanted the doctor to tell me was whether i would be alive or dead in five years. whether i would have a recurrence or not. how to plan my life you know. but he gave me a number and i became incredibly intrigued by these numbers and how they actually influence what cancer is. it's little about the actual dividing cells and more about these infrastructure for which we know cancer. >> host: how did we get to be such a number centered statistical profession where our communication with patience is similar to our communicacommunica tion with with colleagues? i am a cancer surgeon and when i talk talked to a colleague about a patient, it should be different than the way i talk to the patient talking at a different level a technical level a staging level. patients sometimes need comfort. they need assurance. they need to be told the truth but in a way that --
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what did you need at that moment? >> guest: at such a good question because i feel like his patients we come into this strange space that we are not used to having and we don't know quite what our role is in being a patient and i had never been a patient before and i wasn't expecting to be as a patient i didn't know what to expect from the doctor treated some doctors say they haven't dashed -- they don't feel well enough trained to talk to different kinds of patients so there are a lot of different things running around this really look and feel like for the patient a life or death space. you have 10 minutes to ask all questions you might possibly have and maybe somebody with you so i think that's a really interesting question. i think the part about numbers, historically the idea that numbers will guide treatment is a relatively new one.
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we started doing trials on populations only in the 1940s and 1950s so before that historians have pointed out that the role of the patient's body took a much greater standing in the process of diagnosis and much less about tests and where people fit into these categories but more about how their body it spoke to and how they themselves articulated the issues with them. and i think we may have come to a place in which the numbers have started to do too much work in the diagnostic process. >> host: it seems like it's very difficult to deliver bad news when you are a doctor and a sort of fallback is to just cling to the statistics and talk about the test or study that you need to get done, focus on the chance of everything being great
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is there a little bit of a denial to you think about the reality of the way the body is and the way our lives are limited? >> guest: i think there is certainly a pressure to focus on the positive and i think that's absolutely true from the medical side of things. i also think there is a culture of focusing on the positive especially around cancer. i think about some of the main spokespeople like lance armstrong who really foregrounded his own agency in finding the right doctor and finding the right treatment and surviving. i think it's a story we all want to believe in. i like it, you know. the truth of the matter is it's not the case and i think a lot of people who i have talked to
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who have advanced cancer or not so advanced cancer feel that their real experience is being denied and that they are not being starting dashed scene and their struggles are not being seen -- and i think that makes it a lot harder for people than it needs to be. there's a way we can retain hope and even hope against hope while also acknowledging that this is really going to be a problem. >> host: what's it like as a cancer patient? you are an extremely accomplished researcher at stanford but thinking for a moment as a patient, what's it like hearing all the militaristic language around cancer? is that helpful to make things clear to patients or is it distracted because it dichotomous is something that shouldn't be die qaeda mice? your thoughts on that. >> guest: yeah. it's such an interesting question precisely because so many of the key cancer
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treatments are military based. so you have chemotherapy from world war i technologies that were designed on the killing fields and suddenly it was found that the soldiers systems for basically melting and this might be up for potential treatment for cancers. similarly with radiation. there had been radiation before world war ii but after world war ii it was understood to be a way to -- the terrifying technologist of world war ii into better ends. >> host: you are saying the chemicals and radiation were used in warfare and they saw the effects on the human body and thought hey maybe we can use this against cancer? >> guest: absolutely. >> host: is that where we get the language from, the war on
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cancer? fighting, winning and losing? where does that come from? >> guest: that's a really good question. it could be one of the bases we get. i'm not as interested in tracing the history of the language as in the effects of that language so i think in one sense that's absolutely right, there is this military dance to it but i also think the way we specify cancer to say as nixon did in 1971, we are going to have a war on cancer and we are going to eradicate cancer presumes that we know what cancer is. that it is something out there that we can see and we can kill. it couldn't be further from the truth. several one of which is cancers being produced around us all the time. we know that i having our plastics and things that make our lives easier. we are also producing certain cancers and so it's hard to say
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we are going to kill cancer when we are producing and at the same time. >> host: d. think the research community is keeping up with all the cancer-causing agents out there in the world's? is it even possible to study some of these things that come to the market so fast? i mean i would think some of these things have 10 and 20 or effects on the body and yet they come to market as fast as the marketplace is ready to adopt them. >> guest: i think that's absolutely true. we don't even have the tools at our disposal to know how to study a lot of these and most products are not studied for their carcinogenic potential. a lot of what we have is suggestion. certain high doses of things will cause cancer. we haven't been able to study low doses as well so what we get is this area of fear and uncertainty and i think that has had a huge impact on how people understand cancer but it's often
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an unspoken impact. >> host: when people asked what they fear most in life, death from cancer is always at the top the list along with blindness. what do you think are the real drivers of cancer and the broad categories of behavioral, environmental and i think of states like west virginia when -- where we know there's a lot of pollution from the mining industry and high rates of increase cancer and lymphoma and leukemia or in central pennsylvania at coal-mining area, high rates of certainly came he is and lymphomas. do we appreciate some of these environment of factors and what's the role of the environment? >> guest: i think the role of the environment is very controversial. it's extremely high particularly directly related to environmental toxins. i think one of the issues here is that there are very few safety nets so one of the
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reasons i was interested in cancer in my first work was some of the ways we have to understand and be compensated or our injuries in terms of faulty designs for somebody doing something that is injured us through law are not able to see cancer in a way. you have to be able to bring a law and be able to proof eight proximate cause but if you are injured 30 years down the line and there is no research that really shows in the way that this chemical has given you this cancer it's virtually impossible to bring a lawsuit. so there is very little way to make any of these companies responsible for the injuries that they made be causing and of course their huge financial disincentives to doing that kind of research. so it's very difficult to do
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that very expensive kind of research. >> host: there was a study recently that showed out of all the clinical trials out there, the% of clinical trials that are introducing a drug that is superior to what's already out there is 4%. only 4% of clinical trials yield a drug that is superior. do you think there's a false hope out there? you hear about the promise of clinical trials. we need them and god bless them for the trials that we have got. tell me a little bit about this perception of the promise of cancer and the hope for a cure and the promise for massive achievements in the short-term. is it a goal? is it a reality? where do we stand? >> guest: i think that's such such -- as you say we need them and to have them we need people to monitor them. part of the problem with cancer is cancer research is the
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results, the improvements are so small that we need huge numbers of people to enroll in the trial. if the trial works a few people you give them the treatment and they are better but if they treatment only slightly works are only works for some people you need to have huge number of people signing up for the trials and to do that it's very easy to kind of overpromise. i think that leaves patients in this behind where they have to sign up for something in their promised future in which they virtually have no hope of taking part. so one of the things that sets up this juncture i think between being a patient whose body is laid down in the service of scientific research and often because of the for-profit medical system and patience are
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laying their body down and the service of profit for other people. i think it's very problematic for how we understand cancer. >> host: dr. jain let's say you are patient and you're offered it clinical trial and there's a 50% chance you may get the placebo or the pill that does nothing versus a studied medication. what if you get the placebo but it turns out midway or at the end of the trial it's discovered that the other medication is superior and has a big benefit? then what? >> guest: oftentimes to get the drug you have to wait for fda approval which can take years depending on which phase of the trial you are a part of. you know, it's a tough question and everybody has to make that call for themselves. it's of course very difficult to get information on side effects
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and how you would be treated once you join the system in terms of having the side effects addressed are the long-term effects of the treatment -- that's a tough question. >> host: you get the lesser of the two medications in a trial. the trial ends. you can't just get the superior one and immediately afterwards. you have to wait for regulatory approval and a period of time? >> guest: in most cases, yeah. >> host: tell me a little bit about the problem of publication bias. when we have the good research study in madison if the results are really impressive, it goes to the medical literature and get cited and becomes a standard and patients are told about it but there might need five or 10 other studies that showed no benefit and it's only the one that the show a benefit that makes it to this spotlight.
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what's the impact of the publication bias of all these academics? ur professor in the academic world. >> guest: i mean i think it's really interesting to trace these studies back in to find you know which cases become the sort of standard for which kind of evidence and i have sometimes found that i will trace something that that i have found is taken for granted truism and found that actually the initial study from which it is based is a very local study or was at that time very controversial and yet somehow those controversies seem to have dropped out. you know that's part of the scientific projects. i think that happens in all kinds of different sciences. you have certain stations at a certain point and it comes resolved one way or the other and not always in the way that's
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necessarily the best practice for the way you would expect. >> host: pretty much -- how much overtreatment if of cancer is going on in america? >> guest: i mean that's a tough question right now because you could say often overtreatment is people with early-stage cancers who have breast cancer which has been in the news a lot recently. if they have early stage, stage i cancer and they have maybe some chemotherapy, some people will say that's overtreatment. other people will say well that's not overtreatment because we don't know which cancers will metastasize and we don't know which ones won't sell as a consequence we treat everybody. you could say that everybody has had chemotherapy even if they have had a late stage cancer because of works for most
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patients. the theory is in the hope that it will work for everyone. so i think the overtreatment sometimes can neglect to account for how little we know about it but cure of a particular cancer. similarly if you look at which hospitals people go to that is a huge effect on what kinds of treatments they will have so sometimes people will be encouraged to have a sector mates or have more surgery where as other places they will feign courage to have less rather than more. definitely there advice they received as well as their own personal history and understandings affect what kinds of treatments they will get. >> host: are patients given all of their options are they under explains the different options when it comes to cancer care sometimes? >> guest: i think sometimes,
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because a lot of the surgery is covered by insurance there may be some interest in the overselling the potential for surgery. i spoke to several people who wanted for example just one mastectomy and then one reconstruction and they were encouraged to have a double mistake to me and that double reconstruction because it would be more even, they could have a body they are happier with and they ended up being quite disappointed in those surgeries or were disappointed that they were offered the option to have no reconstruction at all. there are some occasions in which it's oversold. >> host: it seems like when we talk about cancer care and in your book you emphasize that there are so many things out there really to treat cancer. it's not just chemotherapy. we have learned from research
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studies that your attitude and your approach and your support network -- area recently a study showed that folks that are married when they are diagnosed with cancer can do better than those that are not married. maybe it's because there's someone there, a champion, and advocate. we tend to think of cancer care is chemotherapy. how should we be thinking about at? >> guest: that's a great question. i think you know there are two ways. one is i think it is absolutely critical that people, anybody in the medical system hasn't advocate, an extra pair of eyes. >> host: did you have one? >> guest: i did. i had a couple. i think that can also backfire a little bit -- a little bit. a lot of people have cancers for which there aren't great treatments and so it's easy for someone to absorb the wrong
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message that they should have a better attitude, they should be doing more, they should have been happier. i met people in retreats that i attended. my understanding is that i just didn't laugh enough and that is why i have this terrible ovarian cancer. you know it's just heartbreaking to hear the stories about people who take on personal blame for something that is so far beyond. >> host: they feel guilty when they are diagnosed. you tell them they have cancer and they say i know i shouldn't have done that when i was a kid. >> guest: yeah and even without the guilt for some people the disease i think still has a lot of shame attached to it and i think that's definitely part of the reason. there's a long history where susan sontag wrote about the diminution of people with a disease. i think probably a lot of that was there was little funding going towards cancer research
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and doctors who chose to be cancer researchers in the first half of the 20th century. it wasn't a very respected field it's only in the 1970s and 80s that it's come out of the closet as it were. you could come out and be a cancer survivor or have had cancer or even to a certain extent have cancer and that it was okay. >> host: you alluded to the fact that this field was not very lucrative for doctors in the past and now it's very lucrative especially for hospitals with fusion services, the markup on chemotherapy drugs. there's a huge commercial enterprise. you know i thought as i was reading your book "malignant" the students who care to go into cancer care. these are some of the most altruistic st. of our society. they want to help people. they go through intense training in a culture of its own and they come out with their own values
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and system vocabulary to describe the same condition that they went in to try to improve. what do you see out there when you look at the current state of cancer care in america? >> guest: i mean i think you're absolutely right. to work in cancer, to even be attracted to that kind of work requires so much willpower and willingness to work and take on some of the hard issues of our time. but i think you're absolutely right that the financial incentives are skewed in ways that don't always lead to the best kind of care or even the best research. so we talk a little bit about running controlled trials. now one of the problems is that cancer ,-com,-com ma even one single kind of cancer like pancreatic cancer or breast cancer may be many kinds of diseases and yet when we call it
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one disease for give everybody the same kind of treatment. we need a lot of people to join a trial so the population that doesn't have much diversity in its results. so the pharmaceutical company that wants to design that trial wants the drug to be given to the broadest possible category of people. sometimes drugs to be given for years before it's found that actually if the drug had been tested on more specific smaller numbers of people with a more well-defined cancer, that in fact the drug works for a small category of patients but not for the vast majority of patients who have been given that treatment. so there is an example of a place where the financial benefits of giving everybody the same treatment don't really work in the interest of moving
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forward here. >> host: we spend a lot of time and money as a society on cancer. cancer research, cancer fund-raising and god bless all the people doing marathons in races and fund-raising events and we need all of that, but as a researcher and you are very accomplished. i noticed over 400 references in your book reviewer clearly an academic and i'm sure at stanford you are standing is very high. tell us from your research, how are we doing with cancer? how are we doing with advancing the field? a recent paper at the big meeting of medical doctors interested in oncology, the top paper of the meeting found that a medication that has already been around applied to brain cancer may increase survival by a few months. that was the top paper at the
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research meeting last year. how were we doing? shoot straight with us. >> guest: it depends what your interest is in what how we were at doing. if you're talking about people making money off of cancer, we are doing pretty well i would say. if we are talking about the number of trials that are cancer related, we are doing well. if we are talking about increasing awareness about the disease, i would say we are doing arguably fairly well. if we are talking about increasing people's involvement in cancer broadly construed as with marches, bicycle rides and so on, i think we are doing well. i think we are doing much less well when it comes to actually curing cancer and actually making cancer less of a scourge. i think that's because we are not looking seriously at the causes of cancer. we are not putting resources there. we are not really acknowledging
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how little we know and how that affects the research directions and we are not looking seriously at how much money is paid in have it skews research. >> host: some of my cancer patients are there with no family that we can get in touch with. no one comes to visit them while they're in the hospital and a few times you get ahold of somebody somebody they are not that interested and they drop off the family member at the hospital and aren't really around for the first time. other times there is tremendous family support. you see them. it warms your heart. what is the role of families when it comes to cancer? >> guest: i think it's g-men does the difficult for the family. i think often the role of the caretakers is not well understood. the caretaker is not only there for their health needs and but for their psychological needs. there needs to be a lot more
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research and resources for those people. i think it's hard for them to see a loved one going through a situation that sometimes i can't feel they are doing enough. it's very difficult to talk about these things in realistic ways. and so i think also really important for the patient to have an advocate but also cancer treatment can be so debilitating. you can't be as active as you want to evening getting yourself to the hospital. those roles are tremendous for important and often understated herriot. >> on the go? "after words" is available via podcast through itunes and xml. visit booktv.org and podcast on the upper left side of the page.
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>> host: .or jain have done much research in this field of the culture and the society around cancer care in america. the industries, the patientspatience, the consumers, the profiteers. are their market place predators when it comes to cancer and how much of an industry is cancer care? >> guest: i mean i think part of what i'm trying to point out in the look is that there there's a lot of ill happening in cancer culture and it's not necessarily intended. so i think for example with pharmaceuticals, their aim is not to cure cancer. their aim is to make money so we can't blame them for trying to make money even at the expense of perhaps not having the best cancer research.
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similarly something like vitamin sup laments for example, the fda doesn't have control over these things and often people with cancer, people with terminal diseases will do anything they can. they are vulnerable and people know that. genetic knows that when they are setting up the price and manufactures know that when they are saying massive doses of vitamin-c will improve your life expectancy. there's a significant amount of profit happening when people are most vulnerable. >> host: you do hear of folks when i get a cancer diagnosis spending a german this amount of money on a vitamin line or some product that gives promise of a good outcome. what is it like to actually be in that situation when you are
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told your life is going going great and all of a sudden you're told you have cancer. you are a cancer patient. but starts going through your mind lex. >> guest: i mean i think a lot of people will just try anything if you hear the vitamin-c might help, and it probably won't hurt why not try at? urgently a lot of patients find themselves in a situation where they were at the up massive debts and it's not because they have chosen to buy a lot of vitamin-c necessarily but the medical debts are tremendous for cancer patients. 47% of cancer patients and getting a call from a collection agency trying to collect on their debts. >> host: half of all cancer patients will get calls from collection agencies? >> guest: exact weight so it's a very expensive disease in its inexpensive disease for people and an expensive disease for
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families, for children whose parents have to take long periods of disability or may lose a job. it's a generational disease. >> host: you say that cancer is still the number one cause of household bankruptcy in united states. how do people get in that situation? what about insurance? >> guest: many insurance policies have caps and cancer treatment can easily go over what and/or 2 million-dollar cap often people don't know what those caps are before they are in a situation in which it's too late. often co-pays are significant, 20 or 40% of treatments. >> host: 20 to 40% so it's a 10,000 out of treatment they may spend $4000 of their own? >> guest: exactly. >> host: lifetime caps are supposed to be eliminated in the affordable care act. what are the real world costs that cancer patients incur? there's a lot more than the cost
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of the doctor's visit and the infusion. >> guest: there is time taken off work while expenses still accrue. children still need clothing and tuition and so on. there are these kinds of vitamin supplements were talking about. just the daily life of expense continues while disability payments may be 60% the salary. unfortunately for many people they need 100% of their salary just to get by in their regular life. >> host: so folks saved or don't say for this time in their life? you say about half of all americans will get a cancer diagnosis with an invasive cancer. we are not talking about a small diesel cell skin cancer, invasive cancer. our people in general from your research, are they prepared at that time in their life financially or are they not prepared?
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>> guest: i think one of the broader problems that we are dealing with in this country is people's savings are tied up in the market. as we know from the housing bubble and the tech bubble and so on we can't count on that for times of trouble in the same way as we could have a generation ago like people with pensions or bachelor -- better social security system. a lot of it is based on timing, luck and what is sometimes referred to as casino capitalism. even with the best intentions and hard saving it's very hard to absolutely plan for period at this and one flight. >> host: steve jobs, one of the famous -- that tried alternative treatments later described regrets about it. do you see people exposed to things that could increase their
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risk of dying from cancer and later have regrets about a? you talk about ivf treatment for infertility. evidently there is a cancer risk that many patients are not properly informed of. >> guest: yeah. i have a chapter on ivf in this book because i'm particularly interested in the question of egg donors. ibf is treatment that unfortunately the industry has relied on donor eggs to increase the pregnancy rates enough to make the industry really worthwhile so pregnancy rates are at a relatively small amount. if you have ivf your only 30% like you to get pregnant and a lot of people who can't afford these treatments which are often $20,000 or so are a little bit after the age of their
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fertility. late rarities or early 40s when they decide to have their own children and they depend on younger women to the edge donors. now there is a chance and not much research has been done in this area and that's what makes it such an interesting example for what we do when we don't know what causes cancer that these hormones have -- cancer several years after they are taken. this is not often that knowledge by ivf clinics when they try to get egg donors. >> host: so you want to get pregnant and he coaches clinic. they tell you about ivf you sign up and you say sometimes you will have no idea and they are not informed of the increased cancer risk from the hormone treatment? >> guest: that's right. >> host: how prevalent is this? ivf seems fairly common.
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do you think people are under told the risk of cancer in this treatment than other conditions? >> guest: i think very often this idea that there hasn't been any scientific research kind of becomes -- it becomes articulated as, we have no proof that it causes cancer. >> host: the lack of research gets awfully interpreted as there is no risk. >> guest: exactly. >> host: you are saying common sense and experience in local wisdom and statistics show that that's not really true? >> guest: hormones have been related to cancer since the earliest 20th century. we know there's a link with massage and is hormones and cancer. this particular case the research has not been done to save ease exact hormones given in this particular way at these doses have been causal to cancer. what we do know is medical common sense that other kinds of
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very similar hormones have resulted in various types of cancers. >> host: the number one cause of death in the united states the cdc statistics as heart disease. number two this cancer. number three is medical mistakes and that's not in the cdc. that's using the estimates of the number of deaths for medical mistakes inserted into the rank list of the puts out. you talk a lot about both number two entry causes it death, it cancer and medical mistakes in the same context. tell me a little bit about your research on the subject of medical mistakes with cancer. >> guest: so i was really interested in this diagnosis as a young adult. i was misdiagnosed for a couple of years and when one first finds that out it's easy to take it personally or you think it's
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a result of one's own inability to communicate with the doctor. >> host: you were told you had something that you didn't have? >> i was told i had something that i wasn't told. >> host: was their suspicion? >> guest: exact way. i found out actually that young adults are adults between the ages of 20 and 39 are very often misdiagnosed and that's because cancer is understood by many physicians as a disease of older adults. it's a result of the fact that there is no screening for younger adults and so i learned that actually about three-quarters of cancers in adults are caught at late stages. now this i thought was it problem and i was interested in talking to younger adults who had been diagnosed late to find out why that was.
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if anything could've been done about it in a specific problems adult faced as young adults with this disease that is so often thought to be one that only older adults face. you know it's true that cancer is only second on the list of causes of death but for many demographics its first and one of those demographics is women under 40. >> host: what do you think the next steps are in really making progress with cancer, really it dancing the science, really offering things that are more promising? it's clear that we have pledged those with certain treatments. pancreas cancer, my field, there have been very little advancements and achievements over the last 20 years. as a matter fact the prognosis today is similar to the prognosis 20 years ago. in other fields like childhood
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leukemia, diseases that were incurable are now curable routinely and it's amazing at the advances. what can we do? some people have talked about the structure by which researchers performed, the way that researchers face barriers, the way the funding mechanism is set up. you talk about really the drivers of research funding in the united states. tell me a little bit about your ideas from your research on restructuring the whole approach. >> guest: yeah. i think that's really an interesting question. one of the things i feel strongly about is that the research needs to be more targeted toward the specific kinds of cancers so it seems clear one of the reasons that young adults have not have survival increases in their cancers ever is because research is constantly being done on older adults and then being
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given to younger adults as if it's transferable. so i think one of the things that can be done is thinking about smaller populations. again that goes against all the economic and shifting cancer research so one of the things i'm trying to point out in this book is all of these different paradoxes that are happening and that happened when we think about cancer as one solid thing. i am particularly curious and thinking about how all of these paradoxes layout positions for cancer patients. they are in many ways kind of unlivable, and it's very difficult to understand to get back to what we talked about in the beginning of the conversation a prognosis and what it is to live inside that space of uncertainty. you don't know whether to save for retirement and you don't even really know what that number means and what your chances are. i am very interested in how we
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have to move in these paradoxes of thinking about cancer. >> host: seems like when people are given a cancer diagnosis everything goes through their mind. there is almost a psychological trauma in addition to all the treatments that someone has to undergo. they are full of anxiety about what am i going to do about this plan i had for next year or school or talking to my significant other about this or do i tell people? do i come out and openly talk about what i went through or do i keep it private acres of the stigma? that something you wrestled with in your book. i loved this book "malignant" how cancer becomes us because you are very honest about what it's like to go through cancer and as an accomplished researcher you do an extensive body of literature on the industry around it. you decided to talk openly and honestly about it.
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tell me about that dilemma. >> guest: yeah it was definitely a dilemma because of you know the tremendous shame i felt being diagnosed and the kind of incomprehension i had. when i first started writing about it was as a way to make sense of it. ..
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>> of how many times other people have it to lie under their radiation machine it is such a lonely experience but yet so many of us have to go through a. it is a normal american experience but we think that as unique that few of us have to go through that is completely separate and it is not. that is what i try to bring out in the book. >> host: you have such enthusiasm to share your
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story. some of my cancer patients describe their life is better after given the diagnosis because now they live life with a different attitude. they do things they always wanted they check-in one year later to say last year i have done all these themes i have wanted to do my whole life. how much to do you think we have created a sick world or the expectation with you get this we will -- you will go below the radar bobby active for have awful life? how much is that cancer becoming us or the natural course of human life? >> guest: i talk about that as the cancer card in a way. in some ways people lose
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friendships they suffered tremendous losses. which parts of their bodies with the ability to do the things that you say in many cases or they have the sudden realization i have to do it now. there is something about our culture that often wants us to wait to. weir's was to have fun after we save our whole lives said we retire with a certain work ethic me. so in some ways it is that opportunity that we all have short lives regardless how long they are. but it is important to really say that people have many, many different responses to proliferate the understandings of what that
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means to have the diagnosis or the possibility for many different identities. not just these survivor identity or just to go under the radar or be quiet about it. >> it is clear to me you are not a cynic you are not wedded to% optimistic 100 percent of what needs attention that you have a balanced perspective. tell us about the positive things of the well intended progress we have seen with cancer care. >> i attended a retreat for one week that was absolutely life changing to the end of my treatment. it created a space for about
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eight people who had gone through cancer treatment to discuss in real terms without having to fake anything the experience they had and the challenges that they had. this is a space that it sounds corny but honest communication and friendship and trust. and i think this was a real leap forward to talk about what cancer means to different people. there is a lot of space for that kind of care and attention for not on the patience and caretakers but positions and people who have to deal with what is essentially a disease that we are often very powerless. a recognition of the powerlessness could take us somewhere to in terms of
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having reasonable expectations for our allies and our death. to understand what is good about palliated care not just to give up but excepting the part of life that death is a giant leap forward to think about health. >> most hospitals have been sitting policy hours centered around who is allowed to be in the room or how many people or what time they cannot visit. and our hospital at johns hopkins we came to the realization that the family is an important partner and we want them in the river as part of the team, is sleeping in their room, a visiting athletes hours, we need to be civil we cannot have limited nursing staff
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but becker put positions from africa are laughing face said you just know word we have done for centuries. tell me when you are the cancer patient what goes a long way? that you know, somebody going through what could they appreciate? >> off the end of the world.
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we but if it is not based to face. it is good to know people are putting around still. >> host: could look with you at your work as stanford university and congratulations on your book. it has been a great to have this conversation. >> thank you.
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>> the amazon kendall is a loyalist reading device. four blocks newspapers and magazines and books.
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today we have over 100 tardive 5,000 books available in the key is the whale was you could download immediately within 60 seconds in you can read the entire book wherever you are. >> what does that cost? >> most books are $9.99 or less. it is always less than a printed book. >> host: you have 125,000 titles right now? >> we launched last november with 90,000 so since november we have been able to add one vendor to 5,000 and we are working closely with publishers who have been supporting us strongly.

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